Hello!
My name is Svetlana Nechaeva, and my only son's name is Ivan. We are from Kemerovo region. Vanya got sick in November of last year, when he was 17. He was studying at the 11th grade, which he did not finish due to his illness. Vanya was diagnosed with acute lymphoblastic leukemia. He was started on high-dosage chemotherapy in Novokuznetsk. During treatment, my son lost weight to 48 kg. He did not get up from the bed for 42 days and then he had to learn to walk and eat again. The treatment continued until July.
After Vanya achieved remission, in March his doctors forwarded his documents to St. Petersburg and we were invited for a consultation at R. Gorbacheva Institute of Pediatric Hematology and Transplantology. It was decided to offer Vanya bone marrow transplantation and a matching donor was found at the international registry.
However, transplantation was performed only 4 months later, on August 14th, as Vanya had a relapse and had to undergo chemotherapy. Vanya is now receiving many antibiotics and need expensive medications (antifungal drug Vfend and others).
No one knows how much more money we will need for the medications, lodging and flights. My husband works, but I had to leave my job to care for Vanya. I am very thankful to everyone whose hearts ached for us and who helped us. They are our town residents, students of Bolshe-Taldinskaya and Terentievskaya schools, and workers of Taldinsky coal mine. We are hoping that in the future people will help us too.

Svetlana, Ivan's mom
Contact phone:
+7 (964) 363-87-43

Medical report

Update as of September 25, 2009. Ivan underwent transplantation as scheduled and was discharged for outpatient monitoring. He feels relatively well, except for skin GVHD symptoms. Ivan needs Vfend at 400 mg a day to fight fungal infection in his lungs.

Update as of October 26, 2009. The doctors took aspergillosis under control, and Vfend was replaced by Mycosyst. Ivan feels well.

Update as of December 9, 2009. It is 117th day after transplant. For a month we stayed on treatment at the clinic due to stage III skin GVHD. Ivan has temperature to 37.8C, and his blood counts do not rise to the normal levels.
In two weeks, Vanya is planned to have donor's lymphocyte infusion. He takes Dasatinib and still needs Vfend.
Vanya is now an outpatient and he receives Cymevene.
Vanya's mom

Update as of January 12, 2010. Vanya was taken to intensive care unit with downturn in his condition: low blood pressure and fever. His condition is becoming more stable.

Update as of January 27, 2010. Ivan is at the clinic where he receives therapy for skin GVHD.

Update as of February 4, 2010. Ivan is at the intensive care unit due to worsening of intestinal GVHD. He was put on enteral nutrition, Intestamine, which has to be purchased.

Update as of February 9, 2010. Ivan is still in intensive care with stage IV GVHD, but he is now stable. Ivan urgently needs Albumin and enteral nutrition Intestamine.

Update as of February 20, 2010. There are fewer signs of GVH reaction but Ivan is still in intensive care due to a grave form of undernourishment. Ivan needs enteral and intravenous nutrition. We need help with buying Intestamine, Modulen, Lipofundine, Omegaven.

Update as of March 7, 2010. Although Ivan is still in intensive care, his condition is stable enough that soon he will be transferred to the unit.

Update as of March 23, 2010. Ivan's condition had improved. He no longer needs Intestamine and was put on a special diet. He started gaining weight little by little.

Update as of April 3, 2010. Ivan's condition in regards to GVHD stabilized, but he got a viral infection and was started on antiviral therapy.

Update as of April 30, 2010. Ivan continues antiviral therapy and takes Albumin. He is still seriously fatigued.

Update as of May 26, 2010. For a long time Vanya has been losing protein. His kidneys are not working well, so he receives Albumin injections in large doses. He has difficulty walking due to swelling. Vanya constantly needs Albumin, enteral nutrition and Modulen. Vanya is in a very difficult condition.

Update as of July 14, 2010. Vanya is in remission and GVHD was taken under control as well. However, his kidneys are not functioning well still, and he needs to take Albumin regularly. Also, due to atrophy of leg muscles, Vanya can barely walk.

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